Program Policy Framework for Early Intervention in Psychosis · framework guiding mental health reform in Ontario, provides the overarching framework for the development of a program

Program Policy Framework for Early Intervention in Psychosis

December, 2004

1

Table of Contents2 Introduction

2 The Importance of Comprehensive and Early Intervention

4 Context for the Program Policy Framework

4 Broader Healthcare Directions5 Mental Health Reform5 Need for Policy Direction Specific to Early Intervention in Psychosis

6 Priority Population for the Program Policy Framework

6 Principles

7 Key Objectives

8 Key Components

9 1. Facilitating Access and Early Identification10 2. Comprehensive Assessment10 3. Treatment11 4. Psychosocial Supports11 5. Family Education and Support12 6. Research12 7. Public Education

13 Program Characteristics

14 System Characteristics

15 Interministerial Responsibility

16 Next Steps

17 Appendix 1: Levels of Need18 Appendix 2: Ontario Early Intervention in Psychosis Programs20 Appendix 3: A Sampling of Key Research Findings on Early Intervention in Psychosis –

From the Literature Review23 Appendix 4a: Early Intervention in Psychosis Policy Work Group Terms of Reference25 Appendix 4b: Early Intervention in Psychosis Policy Work Group Membership26 Appendix 5: Making it Happen Principles Applied to Early Intervention in

Psychosis Services27 Appendix 6: Recovery Philosophy

IntroductionThere has been growing world-wide interest in the area of early intervention in psychosis inrecent years, and that interest has extended to Ontario as evidenced by the establishment ofearly intervention programs in the province. These programs reflect an optimism about theoutcomes that are possible for people who experience psychosis if appropriate and timelytreatment and supports are provided. This program policy framework is intended to provide a guide for new as well as existing programs in Ontario.

The Importance of Comprehensive andEarly Intervention The experience of psychosis1 has very profound impacts on the individual and their familymembers and friends. A first episode of psychosis most often occurs in adolescence or earlyadult life. An experience of psychosis at this stage has great potential to derail educational,work and social goals. A response that specifically considers the key developmental stage ofthose experiencing an initial episode of psychosis is critical.

Symptoms of psychosis include delusions, hallucinations, disorganized thinking and disorganizedor bizarre behaviour. Figure 1 describes the early signs and symptoms of psychosis as well asthe phases of first episode psychosis. About 3% of people worldwide will experience at leastone episode of psychosis in their lifetime and approximately one in 100 will receive a diagnosisof schizophrenia.2 The incidence of first episode psychosis is estimated to be 15-20 cases per100,000.3 The overwhelming majority of first episodes of psychosis will occur among youngpeople between the ages of 15 and 34.4

Intervening in a comprehensive way as quickly as possible following the onset of psychosis is of significant importance. A recent Canadian study found that individuals experiencingpsychosis for the first time tried an average of 2.3 times to obtain help and the average lengthof time that psychosis was untreated was almost two years.5 There is evidence that the timeperiod between the onset of psychosis and response with appropriate treatment is importantbecause the longer this delay, known as the “duration of untreated psychosis” (DUP), the poorerthe clinical outcomes. Other consequences of delayed treatment that have been identified include:interference with psychological and social development, strain on relationships, loss of familyand social supports, distress and increased psychological problems among family members,disruption of study and employment, substance misuse, and increased costs of management.6

The economic and societal impact of untreated psychosis should also be considered since potentialconsequences include homelessness, incarceration and reduced prospects for long-term recovery.

1 Psychosis is a disorder which affects the brain causing a distortion of, or a loss of contact with, reality. Psychosis is known toaccompany several psychiatric diagnoses including schizophrenia, bipolar affective disorder, depression, schizophreniform disorder,delusional disorder and schizo-affective disorder as well as some medical or neurological illnesses. Edwards, G. & McGorry, P.D.(2002). Implementing Early Intervention in Psychosis: A guide to establishing early psychosis services. London: Martin Dunitz.

2 Milliken, H. (2003). First episode psychosis: What are the signs? The Canadian Journal of CME, November, p. 131-136.3 Lines, E. An Introduction to Early Psychosis Intervention: Some relevant findings and emerging practices, retrieved from the world

wide web at www.cmha.ca/english/intravent/about.htm4 It is estimated that there will be 3,430,500 people in Ontario in this age range by 2006. Ontario Ministry of Finance (2002). Update to

Ontario Population Projections 2001-2028.5 Addington, J., van Mastrigt, S., Jutchinson, J. and Addington, D. (2002). Pathways to care: help seeking behaviour in first episode

psychosis. Acta Psychiatrica Scandinavica, 106, 358-364.6 Edwards, J. and McGorry, P D. (2002). Implementing Early Intervention in Psychosis: A guide to establishing early psychosis

services. London: Martin Dunitz.

2

It is also well known that suicide is a major cause of death among young people in generalaccounting for 24% of all deaths among 15-24 year olds.7 Suicide is the leading cause ofpremature death among people with schizophrenia with between four and 13% committingsuicide.8 Between 10 and 15% of people with psychosis commit suicide with two thirds of thesesuicides occurring within the first five years of the illness.9 Intervening early and appropriatelyin psychosis may reduce the risk of suicide since increased risk has been associated withfactors such as adolescent onset, co-morbid conditions including substance abuse, fewertreatment opportunities and social supports, feelings of hopelessness, greater deterioration,loss and stigma.10

While there are many good reasons to ensure a comprehensive and swift response to psychosis,the most compelling is simply to ensure that individuals do not suffer unnecessarily.

Figure 1: Phases of First Episode Psychosis11

* This “prodrome” is usually only identified after psychosis has been diagnosed (McGorry & Edwards (2000), p. 25).

7 Health Canada (2002). A Report on Mental Illnesses in Canada.8 Sandor, A. (2001). Suicidal ideation and substance misuse in first episode psychosis. British Journal of Psychiatry, Rapid response,

December.9 Brennan, M. (2002). Early Intervention in Psychosis: Fellowship Report. Wakefield and District Health Action Zone.

10 Beautrais, A.L. (2000). Risk factors for suicide and attempted suicide among young people. Australian and New Zealand Journal of

Psychiatry, 34, 420-436.11 Adapted from Milliken, H. (2003). First episode psychosis: What are the signs? The Canadian Journal of CME, p. 132.

3

Premorbid Phase• Period from

birth to the first signs of illness

Prodromal Phase*

• Period of behaviouralor functional changethat precedes obviouspsychotic symptoms.

Duration of Untreated Psychosis(DUP)

Stable Phase Stabilization Phase

No Signs of Illness

First Signs of Illness

Functionalrecovery,

relapse

Remission ofSymptoms

FirstTreatment

Onset of Psychosis

}}}

}}

Context for the Program PolicyFramework

Broader Healthcare DirectionsThis program policy framework for early intervention in psychosis is positioned within thebroader health policy context and government directions for healthcare. Ensuring earlyintervention is available to young people experiencing psychosis is consistent with currentemphasis on improved access and wait times, improved health outcomes and planned, enabledand evidence-based care. Enhanced funding for early intervention in psychosis services inOntario has the potential to provide alternatives to costly and inappropriate inpatient hospitalservices and to reduce pressure on existing mental health services.

There are also identified opportunities for integration of early intervention activities withbroader healthcare initiatives such as primary care.

The goals of primary care reform are: • 24/7 access in an integrated continuum; • continuity of care; • early detection and action;• better information on needs and outcomes; and• newer and stronger incentives for providers to participate in primary care approaches.

An environment of reform within both primary care and mental health presents opportunitiesto consider how the needs of young people who experience psychosis can be addressed in away that is consistent with priorities and combines the strengths in these two areas.

There is the potential for primary care practitioners in Ontario to play a key role in identifyingand engaging young people experiencing psychosis. It is known that most people experiencingmental health problems do not seek professional help and adolescents and young adults arethe least likely to use mental health resources.12 An Ontario study13 found that while manypeople with mental health concerns do not seek help, they do utilize family physicians whendealing with general health concerns. As well, a considerable percentage of those seekinghelp for mental health issues contact their family physician alone, or in addition to specialitymental health service providers. The primary care practitioner is well positioned to play animportant role in the detection of psychosis at an early stage. Of critical importance will beensuring that they are supported in this role through linkages with the mental health system,or through their involvement in Family Health Teams that may include staff with mentalhealth expertise.

Current mental health policy acknowledges the need for primary / speciality care partnershipslinking primary care practitioners with mental health specialists. In Ontario there are currentlymany shared care arrangements in place whereby psychiatrists support and provide consultationto primary care practitioners serving individuals with mental illness. Existing arrangements of this kind can be utilized effectively in the early detection and referral of individualsexperiencing psychosis.

12 Statistics Canada (2002), Canadian Community Health Survey, Mental Health and Well-being.13 Parikh, S.V., Lin, E. and Lesage, A.D. (1997). Mental health treatment in Ontario: Selected comparisons between primary care and

specialty sectors. Canadian Journal of Psychiatry, 42, 929-934.

4

Mental Health ReformMaking it Happen: Implementation Plan for Mental Health Reform, the current policyframework guiding mental health reform in Ontario, provides the overarching framework forthe development of a program policy framework for early intervention in psychosis. Making

it Happen adopts a “levels of need” approach to identifying the range of client needs and thetypes of services required. First episode in psychosis is identified within the “intensive” level,which includes mental health assessment, treatment and support services which are focused onpeople with serious mental illness. With a broadened focus that emphasizes early identification,the “first-line” level of need is also applicable. This level includes assessment and treatmentprovided by frontline healthcare providers who often encounter those experiencing a firstepisode of psychosis and have a role to play in ensuring appropriate support and referral (See Appendix 1 for more explanation of “levels of need” within Making it Happen).

In 1999, nine Mental Health Implementation Task Forces were created in Ontario to developregional implementation plans for mental health reform consistent with Making it Happen.Most Task Forces included the need for early intervention programs within their recommendations.In their final report, the Provincial Forum of Task Force Chairs also identified treatment,education and support for individuals experiencing psychosis and their family members asessential elements of an integrated system of mental health services and recommended thedevelopment of a policy framework for first episode psychosis.14

Need for Policy Direction Specific to Early Intervention in PsychosisIn Ontario, five early intervention in psychosis programs have been established by hospitalslocated in Toronto, London, Hamilton, Ottawa and Kingston (see Appendix 2 for a descriptionof these programs). Funding announced in 2004 will permit enhanced capacity in the provincein the area of early intervention in psychosis services.

Existing programs have developed without the benefit of specific program policy direction. In order to ensure that early intervention programs reflect existing policy direction and are guidedby a consistent framework, the ministry undertook a program policy development process.Experience from existing programs and ongoing research evidence provided the basis for thedevelopment of the program policy framework for early intervention in psychosis. A literaturereview and an analysis of early intervention initiatives in other jurisdictions were undertakento inform the development of the framework (See Appendix 3 for a sampling of key findingsfrom the review).

An external advisory group, the Policy Work Group on Early Intervention in Psychosis, wasestablished to provide advice to the Ministry of Health and Long-Term Care (MOHLTC) onwhat should be included in the program policy framework for early intervention in psychosis(see Appendices 4a and 4b for Terms of Reference and Membership). This ministry PolicyWork Group included representatives from the Ontario Working Group on Early Interventionin Psychosis (OWG) which was formed in 1999 with the goal of partnering with government toimprove the early detection and treatment of psychotic illness in the province. The OWG includesrepresentation from the five early intervention programs in operation, organizations involvedin developing early intervention programs and others that focus on family supports and publiceducation related to early intervention in psychosis.

14 The Time is Now: Themes and Recommendations for Mental Health Reform in Ontario (2002). Final Report of the Provincial Forumof Mental Health Implementation Task Force Chairs.

5

Priority Population for the ProgramPolicy FrameworkThere is considerable variation in who is identified as the priority population for early interventionservices both within Canada and in other countries. Three factors account for these differences.Priority populations differ depending on how criteria relating to age, diagnosis and previoustreatment are applied.

The priority population for this program policy framework was established based on theexperiences of established programs including those in other jurisdictions, recommendationsof the Policy Work Group, and on information about who experiences first episode psychosis.The priority population is comprised of individuals between the age of 14 and 35 years old15

who are experiencing a first episode of psychosis, or who have not received previous treatmentfor psychosis. This age range for the program policy framework will capture the vast majorityof individuals experiencing a first episode of psychosis. While a first episode of psychosis occursmost typically between the ages of 16 and 25, the lower age limit will ensure that those underthe age of 16 experiencing psychosis can benefit from services designed specifically to addressfirst episode psychosis. Extension of the upper age limit acknowledges that there may begender differences in the age of onset of psychosis. For schizophrenia, one of the most commondiagnoses associated with psychosis, the age of onset for women is about 4-6 years later thanfor men.16 An upper age limit of 35 will ensure that women are not disproportionately excludedfrom early intervention programs.

Within this framework, it is the experience of psychosis that determines an individual’sappropriateness for an early intervention in psychosis program, not any particular diagnosis.This is important since establishing a diagnosis to explain the underlying cause for psychosismay take a considerable length of time.

Those experiencing prodromal symptoms only, without clear symptoms of psychosis are notincluded within the priority population for the framework because there is currently no adequateevidence for doing so. The point at which intervention is recommended may change as knowledgein this area develops.

Principles Many of the principles that underlie the program policy framework for early intervention arethose that have been identified in Making it Happen. Appendix 5 highlights Making it Happen

principles that also apply to this program policy framework. Additional principles describedbelow have been identified as having a particular relevance to early intervention in psychosis.Taken together, these principles will provide guidance in the planning and development of earlyintervention programs and should be reflected in all aspects of the delivery of these programs.

15 There may be a need for some flexibility at the upper and lower ends of the age range depending on differences in available serviceswithin local areas for those who do not fall within the priority population definition. As well, it is expected that early interventionprograms will provide consultation to those programs serving individuals outside the priority age range.

16 Seeman, M. V. (2000). Women and Schizophrenia, Medscape Women’s Health 5(2).

6

Recovery Focused (See Appendix 6 for additional information on recovery).A recovery-oriented approach underlies the delivery of treatment and support services. A recovery-oriented approach emphasizes consumer choice, flexibility in services, individualizedsupports, and the importance of families, significant others and communities in supportingindividuals with mental illness. Such an approach also considers the impact of factors such aspoverty, poor housing, unemployment and stigma on people with mental illness. Consistent witha recovery philosophy, early intervention in psychosis programs have a culture of hope andexcitement about the possibilities for the future. Such an environment is critical in facilitatingindividuals’ recovery.

Innovative and Appropriate Engagement

Early intervention programs employ innovative and youth-oriented approaches to engaging youngpeople and their families and are willing to try new strategies that may facilitate engagement.

Non-stigmatizing

Services are provided in an environment considered by the individual to be least restrictive,intrusive and stigmatizing. Program staff engage in community activities that are aimed atdispelling myths of mental illness and psychosis.

Collaborative

Consumers, families, family organizations, service providers, government and the communitycollaborate in creating, delivering, and developing awareness about early intervention inpsychosis services.

Empowering

Consumers have the right and responsibility to be involved in decision-making related to treatmentand service provision and have access to information and support needed to make informedchoices and become active members of the treatment and support team. Family members havethe same rights and responsibilities for services provided to them. With consumer consent, familymembers are also expected to become active participants in the consumer’s treatment team.

Education and Support for Families

Education is available in a timely way to support all families of individuals experiencing their first episode of psychosis. Support to families is tailored to meet their changing needsand can be provided independently from the services and supports offered to individualsexperiencing psychosis.

Key Objectives A comprehensive early intervention in psychosis program is focused on achieving thefollowing objectives:• Reducing the duration of untreated psychosis through early and appropriate detection and

response, thereby potentially reducing the severity of the illness. • Minimizing the disruption in the lives of young people who experience psychosis such that

educational, vocational, social and other roles can be maintained.• Minimizing the societal impact of psychosis including reducing demand in other areas of the

mental health, health and social service systems and reducing disruption in the lives of families.

7

Services and Supports to Individuals and Families

Comprehensive Assessment

Treatment

Psychosocial Supports

Family Education and Support

Coordination of Supports

Public

EducationResearch

Linked to primary care, community mental health, social service and education systems

Facilitating Access and Early Identification

8

Key ComponentsKey Components: Program Policy Framework for Early Intervention in Psychosis

Figure 2:

Seven key components of a comprehensive program policy for early intervention:- Comprehensive Assessment- Treatment- Psychosocial Supports- Family Education and Support- Facilitating Access and Early Identification- Public Education- Research

• Within the triangle are four program components representing the specific services andsupports that early intervention in psychosis programs provide to individuals and their families.

• Outside the triangle are three components representing broader activities that need tobe undertaken to help create awareness of early intervention in psychosis programs,facilitate referrals to programs and to ensure that programs are evidence-based.

• Program components are linked within the framework, ensuring that consumers andfamily members experience coordinated service.

• There are also links between program components and the broader system componentsas each influences and is influenced by, the activities of the other (e.g., early interventionprograms inform research and are informed by research findings).

Key ComponentsThe key components describe the services and supports that are needed to establish acomprehensive early intervention in psychosis approach for the province. Achieving the identifiedobjectives requires that individuals and their families have access to these components andthat they are delivered in a coordinated way. It also requires that other components are in placethat ensure: easy access to needed services, an awareness about psychosis in the community,and a commitment to research that leads to evidence-based practices than can be applied inthe field.

The following key components of the program policy framework were developed based on discussions of the Policy Work Group, a review of the early intervention literature and on the experiences of early intervention programs both within and outside Canada.

1. Facilitating Access and Early Identification The goal of this component is to identify those experiencing psychosis at an early stage andprovide help as quickly as possible. A longer-term goal is to increase self and family referrals to early intervention in psychosis programs.

The focus is on educating those individuals who are in positions to identify individuals in needof help and / or in a position to recognize changes in a young person’s behaviour. Educationregarding early intervention in psychosis may involve formal professional training or may bedelivered through workshops and presentations targeted to those working with young people.General information incorporated into the school curriculum or delivered in special workshopsand presentations to students is also included.

Education about psychosis and related resources should be available in the wide variety ofsettings where young people are found, as well as settings where young people experiencingmental health problems or their family members are likely to turn for help. Examples include:• Primary care practitioners such as family physicians, nurse practitioners, nurses and

emergency room staff, who are often the first point of contact especially in rural areas;• Spiritual / religious leaders, teachers, and guidance counsellors; • Social service workers and agencies that provide services to youth such as shelters,

corrections services, child protection, youth employment and education workers;• Existing community mental health services in order to assess, identify and appropriately

refer individuals; and, • Workplace-based Employee Assistance Programs (EAPs), managers and human

resources personnel.

Of course, parents and other family members are often the first to notice behaviour changesand the symptoms of psychosis and they require information and support to be able to helppeople to access the treatment they need.

Providing education to those who can act as champions for early intervention in psychosis inlocal communities is also important. For example, community mental health agencies can playa leadership role by undertaking activities such as community awareness in schools, with youthgroups, and with primary care practitioners.

9

2. Comprehensive AssessmentThe goal of the comprehensive assessment is to obtain all the information that is required todevelop an appropriate, individualized treatment plan. A comprehensive assessment is undertakenif initial screening indicates that additional assessment is required. An assessment involves:• a thorough medical / neurological examination;• a psychiatric assessment including identification of co-morbid disorders (e.g., substance abuse);• assessment of dimensions of personality as well as functioning in social, family and

vocational / educational and other contexts.

The assessment takes into consideration:• developmental history;• level of pre-morbid functioning; and,• input provided by caregivers, family members and others who are in a position to recognize

changes in the behaviour of the individual.

During assessment, a therapeutic alliance with the individual and their family is initiated andthe individual’s and family’s goals are identified.

3. TreatmentWith treatment, the aim is to effect remission of the psychotic episode thereby improvingfunctioning and quality of life.

Treatment approaches utilized in early intervention programs include some or all of the following:• medication;• psychoeducation provided to consumers and the family;• counselling;• case management / care coordination;• cognitive behavioural therapy (CBT);• substance abuse / use treatment and supports; and, • crisis intervention.

Physical and psychiatric re-assessment will be undertaken periodically as individuals’ needsand / or goals change.

The focus is on providing optimal, comprehensive intervention to individuals experiencingpsychosis in an environment that supports their recovery. Specific attention is given to identifyingco-morbid disorders (e.g., substance abuse) thereby increasing the effectiveness of treatment.Individuals are supported to learn as much as possible about managing their own illness andsymptoms of the illness.

10

4. Psychosocial SupportsPsychosocial supports are designed to help individuals pursue their life goals. Included arethe following types of supports: • educational / academic;• vocational / employment; • housing;• recreational; and,• social (e.g., activities focused on spirituality or those centred on the development of skills

needed to establish social / intimate relationships); and,• peer or mentor support / self-help supports.

These supports help individuals achieve self-defined cognitive, vocational, social, educational,emotional and other goals. This may mean re-discovery of goals held prior to the illness or thediscovery of new goals.

5. Family Education and SupportFamily education and support is intended to assist families understand and cope with theirrelative’s illness, minimize disruption in their lives, and promote families’ empowerment,health and recovery. Professionals may provide services and supports to families and / orfamilies may receive support from other families who have experienced similar challenges.

The following services and supports are included within family education and support: • family education / psychoeducation;• crisis support and intervention;• individual counselling;• family therapy;• family support groups;• family “networking” opportunities during social activities;• consideration of family’s physical health;• multi-family education groups;• training families to be peer facilitators; and,• in-home support.

11

6. ResearchThe goal of this key component is to develop a capacity to undertake research that furthersour understanding of psychosis and contributes to the development of an evolving set ofevidence-based practices. Examples of possible areas of investigation include: • causes of psychosis; • treatment approaches associated with better outcomes; • identification of specific interventions that are more effective under certain circumstances; • improved understanding of why people drop out of programs; • the most effective ways of facilitating early detection and intervention; and,• improved understanding of the value of treatment and supports for consumers and

family members.

7. Public EducationThe goal of public education is to de-stigmatize the experience of psychosis and mental illnessand improve public understanding and perception of psychosis and mental illness (e.g., mentalillness as a manageable illness). As well, education initiatives should raise awareness of theimportance of intervening early in psychosis resulting in more family, peer and self-referralsto early intervention in psychosis services.

This component involves:• providing information to the public about psychosis and mental illness by using various

forms of media;• developing and promoting consumer champions and educators; and,• encouraging the participation of families and their organizations.

Public education initiatives should encourage and foster the idea that individuals with a mentalillness are valuable members of all communities who want to feel a sense of belonging to thosecommunities as we all do.

12

Program CharacteristicsWhile specific programs and services may look different because local needs and existingsystem configurations vary, there are some key features of services that need to behighlighted given their importance in meeting the needs of people experiencing psychosis.

• First, early intervention services and supports provided to individuals and their familiesshould be consistently available for a period of three years, after which time it is expectedthat programs will assist individuals to transition to other appropriate services and supports.

It is known that individuals experience the most disability due to the illness within the initialfew years after a first episode of psychosis.17 It is during this time period that interventionsare most important because the personal, social and biological factors that influence thecourse of illness develop in this time period.

Transitioning to other community mental health services, primary care practitioners,community psychiatrists or other supports following participation in the early interventionservice should involve appropriate consultation and communication on the part of the earlyintervention service. As well, there is a need to ensure adequate education of individuals andagencies that will provide follow-up support to those leaving the early intervention service.

• Secondly, home-based treatment may be a very appropriate approach to serving youngpeople experiencing first episode psychosis and may be beneficial because of the potentialto provide a less stigmatizing environment.

While access to inpatient beds is sometimes needed in order to meet the needs of individualsexperiencing psychosis, most services can be provided in community-based settings.

Decisions to provide home treatment need to be made based on the particular circumstancesand include assessment of family, individual and treatment team factors.18

Where appropriate, outreach to individuals’ homes to provide assessment, treatment andsupports should be an available option.

17 Edwards, J. and McGorry, P. D. (2002). Implementing Early Intervention in Psychosis: A guide to establishing early psychosis

services. London: Martin Dunitz.18 Ibid.

13

System CharacteristicsIn Ontario, it is unlikely that all early intervention programs will develop in the same way, orbe delivered in the same way. While this policy framework describes the key components thatshould be available to individuals experiencing psychosis and their families across the province,it is acknowledged that the way in which these components are designed and delivered mayvary in different communities. Programs suitable in one area may not be practical in anotherbecause of demographic and existing service system characteristics.

While services may evolve differently, there is a need work collaboratively with service providers,consumers and families to establish consistency in terms of the services and supports that are available. The Ministry of Health and Long-Term Care (MOHLTC) will be responsible for examining current capacity and determining how best to provide the key components of comprehensive assessment, treatment, psychosocial supports and family education andsupport to the priority population. Creative approaches that utilize existing early interventionin psychosis programs, community mental health services, primary care resources, educationalinstitutions and health and social services will need to be considered.

Local areas will also develop the capacity to coordinate and share information on local initiatives,identify effective strategies to facilitate access and early identification, co-ordinate training /education, and provide consultation to emerging programs. This may be achieved in differentways depending on how early intervention services evolve in different areas as well as existingservice and community characteristics. There will also be programs in some local areas thatare appropriately positioned to undertake major research and / or public education initiatives,two other necessary components of a comprehensive approach to early intervention.

Existing early intervention in psychosis programs in Ontario are located in large urban centresand all are affiliated with hospitals. The challenge is to develop programs that will be accessibleto all communities in every area of the province and that will provide appropriate directservices and supports as quickly as possible to those who need them. Components of theframework such as public education and research initiatives may be undertaken at theindividual early intervention program level where appropriate or at a provincial level and stillbenefit all local areas.

Experience from other jurisdictions may be useful in determining how early intervention servicesand supports will be made available in rural settings in Ontario. One such initiative, the SouthernArea First Episode (SAFE) Project, has been undertaken in New South Wales, Australia. The approach involves developing specialty capacity within mainstream mental health services.Individuals working within local child / adolescent and adult mental health teams are trainedand supervised by established programs to become experts in the identification, assessmentand treatment of first episode psychosis.

The use of technology such as video teleconferencing may be particularly useful in ensuringthat specialist expertise is available in rural and northern communities, areas that may not otherwise have access to psychiatrists or other early intervention in psychosis expertiseavailable in larger centres.

14

Interministerial ResponsibilityThe age range for this policy framework has been determined based on the incidence of firstepisode psychosis. The framework applies to both adolescents 14-18 years of age as well asadults 19-35 who experience psychosis. Since adolescents and young adults are included inthe priority population for the framework, there are implications for the mandates of otherministries. Mechanisms need to be put in place to make early intervention services as seamlessas possible for individuals and their families.

Ministry of Children and Youth Services (MCYS)

The MOHLTC and the MCYS will need to determine jointly how best to implement this policyframework given the cross-ministerial implications. Of key importance is how the two ministrieswill pool their respective expertise so that adolescents who experience psychosis receive the bestpossible care in the most appropriate setting with the least possible disruption. Those betweenthe ages of 14 and 18 are typically most at risk of not being adequately served by either thechildren’s or adult mental health systems and this segment of the priority population deservesparticular attention. Service agreements between MOHLTC and MCYS funded agencies will berequired if the youngest segment of the priority population addressed in the framework is toreceive the best possible care.

Ministry of Education

Critical to this framework is the need to train teachers, guidance counsellors and other schoolpersonnel about psychosis and available local resources that can assist individuals. As well,opportunities to include information about psychosis within school curricula and other forumsfor educating students should be explored. The MOHLTC and the Ministry of Education shoulddiscuss how best to achieve these goals. Community mental health agencies and early interventionprograms must work cooperatively with local school boards to provide resources and expertiseaimed at enhancing capacity to identify and assist those experiencing an episode of psychosis,and to deliver information on psychosis directly to students.

Ministry of Training, Colleges and Universities (MTCU)

Those who work within post-secondary institutions are identified in this framework as importantto the identification of students experiencing psychosis. In order to facilitate early interventionefforts, training and education of these individuals to increase awareness of psychosis is needed.As well, community mental health agencies and early intervention programs should workclosely with the college and university systems to incorporate information on the importanceof intervening early in psychosis for those in health fields e.g., primary care practitioners andcommunity mental health workers.

15

Next StepsComprehensive early intervention in psychosis programs that are specifically developed tomeet the needs of individuals experiencing psychosis and their family members inspire hopein improved outcomes and a better quality of life for those who use them.

Although more research is needed to fully understand all the factors that determine the bestpossible interventions and the complete impact of intervening early, it is clear that the keycomponents of the approach identified in this policy framework are important in helpingindividuals gain remission from the symptoms of psychosis and at the same time maintainroles central to their quality of life.

Informed by the work of early intervention programs and with this program policy frameworkand the Mental Health Accountability Framework providing guidance, important next stepsinclude the development of standards for programs, outcome measurement, clinical guidelinesand a data collection and evaluation system.

Ensuring that all people who experience psychosis and their family members have access to appropriate early intervention in psychosis services will require collaboration amongstgovernment, service providers, consumers, family members and their organizations and thecommunity. Since the priority population includes adolescents, a cooperative effort is requiredbetween the Ministry of Children and Youth Services and the Ministry of Health and Long-TermCare. The initiative also suggests opportunities for collaboration with the ministries of Educationand Training, Colleges and Universities. Implementing the key components of the programpolicy framework will also require strong co-operation both within the mental health sectorand between the mental health and general health sectors. Resources exist within many sectorsto appropriately address the the needs of individuals who experience psychosis and theirfamilies. Innovative ways of working together to co-ordinate the most appropriate response in any given community will be required if these needs are to be met.

16

Appendix 1: Levels of Need19

These levels focus on the range of clients’ needs, which then determine the types of servicesrequired. The levels First Line, Intensive and Specialized emphasize a multi-disciplinary,client-centred approach to the delivery of mental health services.

• First Line: Refers to prevention, assessment and treatment providers including generalpractitioners, mental health services, social services, hospital emergency services andhospital primary care clinics;

• Intensive: Refers to mental health assessment, treatment and support services which areprovided in community or hospital settings and are focused on people with serious mentalillness; and

• Specialized: Refers to highly specialized mental health programs provided in the communityor hospital settings and which focus on serving people with serious mental illness who have complex, rare, and unstable mental disorders. Long-term care is not synonymous withspecialized care. Treatment, rehabilitation, and support services are integrated within eachprogram / service type and provided through a multidisciplinary team approach.

19 Making it Happen: Operational Framework for the Delivery of Mental Health Services and Supports (1999) p. 63.

17

Appendix 2: Ontario Early Intervention in Psychosis Programs

18

First Episode Psychosis Program (FEPP), Centre for Addiction and Mental Health,

Toronto (CAMH)

Prevention and Early Intervention Psychosis Program (PEPP), London Health

Sciences Centre, London

• CAMH’s current early intervention program consists of an 18 bed inpatient unit, anoutpatient clinic, the Home Intervention for Psychosis (H.I.P.) team which provides earlyintervention treatment and support to individuals and their families in their own homes,as well as a satellite clinic located in Mississauga. In September of 2002 the LearningEmployment Advocacy Recreation Network (LEARN) was started as a small-scale three-year pilot to provide community-based recovery interventions including social,educational and vocational services.

• The First Episode Family Support and Education Program provides support andeducation to families of those involved in FEPP.

• FEPP conducts research in the area of first episode in psychosis examining neurological,pharmacological and cognitive aspects as well as the outcomes associated with differenttreatment approaches.

• PEPP’s early intervention program provides prompt assessment, medical and psychosocialtreatment for first episode psychosis. The core of the program is a modified assertive casemanagement service within which the intensity of treatment is modified by the patient’sneeds, stage of illness and the needs of the family. Patients have ongoing psychiatricfollow-up.

• The program is linked with the PEPP Parent Support Group and with a Peer Support Group.• PEPP undertakes research projects focused on early intervention in psychosis,

prognostic indicators and outcome.• The program maintains an active public outreach strategy involving the local media and

schools and is very active in public education in the area of first episode psychosis.

Early Intervention in Psychosis Program, Hamilton Health Sciences Corporation

(HHSC), McMaster Site, Hamilton

• HHSC’s Psychotic Disorders Team is an interdisciplinary service at the McMaster sitethat has developed expertise in first onset psychosis.

• The clinical approach includes comprehensive assessment, therapeutic partnership withpatients, families and family doctors / nurses, education and support for patients andfamilies, rehabilitation support for recovery, and a shared care after-care program.

• The program has conducted research projects in the areas of program evaluation, family satisfaction, vocational success and a follow-up study of the clinic’s long-termafter-care program.

• In partnership with the local Schizophrenia Society of Ontario (SSO) chapter theprogram has established an Early Psychosis Resource Library.

• Ottawa Hospital’s First Episode Psychosis Program consists of a clinic that providespharmacological treatment, intensive case management, neuropsychological assessment and treatment, day hospital treatment and family and patient education groups.

• The program has also partnered with others in undertaking research focused on earlyintervention in psychosis.

• Through community outreach and education within the district, the program hasestablished a large referral network. Public education initiatives have also beenundertaken through the media and through symposia attended by professionals,consumers and family members.

Ottawa First Episode Psychosis Program, Ottawa General Hospital, Ottawa

• Kingston’s First Episode Psychosis program is established to provide early interventionin the form of education, assessment and treatment of individuals and their families whoare experiencing a first episode of psychosis.

• This program serves as the regional treatment and resource centre to the Southeastern Ontario District.

• Treatment approach is multidisciplinary and is provided to individuals, couples, families or groups.

• The program works closely with the community partners including the local chapter ofthe Schizophrenia Society to provide public education and organized annual conferencesin order to facilitate early detection of psychosis.

• Research into various aspects of First Episode Psychosis and education of trainees fromall healthcare disciplines are integral parts of the program.

Kingston Psychosis Prevention and Treatment Program, Hotel Dieu Hospital,

Kingston

19

Appendix 3: A Sampling of Key Research Findings on EarlyIntervention in Psychosis – From the Literature Review

20

Area of Interest

Importance ofIntervening Early

Impact of Early andComprehensiveIntervention

Investigator(s)

Norman and Malla(2001)

Malla et al. (1999)

Malla et al. (2002)

McGorry et al. (1996)

Findings

• Most compelling reason to intervene early is to reduce unnecessary sufferingassociated with delayed treatment.

• Those experiencing their first episode of psychosis are more responsive toantipsychotic medication and relatively low doses of medication are needed.

• Social supports and insight are intact early on and are important determinantsof outcome.

• Follow-up of 53 individuals with firstepisode psychosis who participated in a community-oriented treatmentprogram of phase specific medical and psychosocial treatmentsintegrated within an intensive casemanagement model.

• Found complete remission of 70%,hospital readmission rate of 20%, highly significant improvement in alldimensions of psychopathology amongthose who entered treatment within sixmonths of the onset of psychosis, and a longer median duration ofuntreated psychosis among those whodid not experience complete remission.

• Examined outcomes for 51 firstepisode patients treated in the EarlyPsychosis Prevention and InterventionCentre (EPPIC) program whichemphasizes intervening early, utilizingtreatment strategies effective forpsychosis and re-integration into thecommunity as soon as possible.

• Compared to a historical matchedcontrol group that received standardtreatment for psychosis, EPPIC patientshad fewer hospital admissions, shorterlengths of stay in hospital, lower levelsof negative symptoms, lower meandose of neuroleptic drugs and higherquality of life scores at one year.

• Concluded after a review of theliterature that it is still an openquestion if a reduction in duration of untreated psychosis leads to better outcomes. Found no welldesigned studies demonstrating this.

• Shorter DUP may reduce feelings of being personally engulfed by the illness and lessen damage to self-esteem, family relations and other social supports.

• Causal relationship between longerDUP and poorer long-term outcomehas not yet been perfectly established.

• DUP may be related to ease of reducingpsychotic symptoms once treatment begins but robustness of these findingsneeds to be established.

• Relationship between reduced DUP and likelihood of relapse (or re-hospitalization) has not beenfound in four studies that haveexamined the question (Haas et al, 1998;Linszen et al, 1998; Weirsma et al, 1998;Robinson et al, 1999).

21

Treatment Outcomesof Reduced Durationof UntreatedPsychosis (DUP)

Larsen et al. (2001)

Crow et al. (1986);Erickson et al. (1989);Aguilar et al. (1997)

McGlashan (1999)

Norman and Malla(2001)

Appendix 3: continued

Appendix 3: References

Aguilar, E. J., Haas, G., Manzanera, F. J., Hemandez, J., Gracia, R., Rodado, M. J. & Keshavan,M. S. (1997). Hopelessness and first episode psychosis: a longitudinal study. Acta Psychiatrica

Scandinavica, 96, 25-30.

Crow, T. J., MacMillan, J. F., Johnson, A. L. & Johnstone, E. C. (1986). The Northwick ParkStudy of first episodes of schizophrenia II. A randomized controlled trial of prophylacticneuroleptic treatment. British Journal of Psychiatry, 148, 120-127.

Erickson, D. H., Beiser, M., Iacono, W. G., Fleming, J. A. E. & Lin, T. (1989). The role of socialrelationships in the course of first episode schizophrenia and affective psychosis. American

Journal of Psychiatry, 146, 1456-1461.

Haas, G. L., Garratt, L. S. & Sweeney, J. A. (1998). Delay to first antipsychotic medication inschizophrenia: impact on symptomatology and clinical course of illness. Journal of Psychiatric

Research, 32, 151-159.

Larsen, T.K., Friis, S., Haahr, U. et al. (2001). Early detection and intervention in first-episodeschizophrenia: a critical review. Acta Psychiatrica Scandinavica, 103, 323-334.

Linszen, D., Lenior, M., DeHaan, L., Dingemans, P. & Gersons, B. (1998). Early intervention,untreated psychosis and the course of early schizophrenia. British Journal of Psychiatry,172 (suppl. 33), 84-89.

Malla, A. K., Norman, R., Manchanda, R., McLean, T.S., Harricharan, R., Cortese, L., Townsend,L., Scholten, D.J. (2002). Status of patients with first-episode psychosis after one year ofphase-specific community-oriented treatment. Psychiatric Services, 53, 458-463.

Malla, A.K., Norman, R.M.G., Voruganti, L.P. (1999) Improving outcome in schizophrenia: the case for early intervention. Canadian Medical Association Journal, 160(6), 843-846.

McGlashan, T. H. (1999). Duration of untreated psychosis in first episode schizophrenia:master or determinant of course? Biological Psychiatry, 48, 899-907.

McGorry, P.D., Edwards, J., Mihalopoulos, C., Harrigan, S.M., Jackson, H.J. (1996). EPPIC: An evolving system of early detection and optimal management. Schizophrenia Bulletin,22(2), 305-326.

Norman, R., Malla, A.K. (2001). Duration of untreated psychosis: a critical examination of theconcept and its importance. Psychological Medicine, 31, 318-400.

Robinson, D. G., Woemer, M. G., Alvir, J., Ma, J., Bilder, R., Goldman, R., Geisler, S., Koreen,A., Sheitman, B., Chakos, M., Mayerhoff, D. & Lieberman, J. A. (1999). Predictors of relapsefollowing response from a first episode of schizophrenia or schizoaffective disorder. Archives of General Psychiatry, 56, 241-247.

Wiersma, D., Nienhuls, F. J., Slooff, C. J. & Giel, R. (1998). Natural course of schizophrenicdisorders: a 15 year follow-up of a Dutch incidence cohort. Schizophrenia Bulletin, 24, 75-85

22

Appendix 4a: Early Intervention in Psychosis Policy WorkGroup Terms of ReferenceName:

Early Intervention in Psychosis Policy Work Group

Purpose:

This provincial internal / external stakeholder Work Group will provide advice that will assist the Mental Health and Rehabilitation Reform Branch to develop a provincial programpolicy framework for early intervention in psychosis consistent with the direction outlined in Making it Happen.

Rationale:

• In August 1999, the Ministry released Making it Happen, the government’s plan for reformingthe mental health system. This policy document committed the government to further policywork in a number of areas including the development of intensive services for thoseexperiencing a first episode of psychosis.

• For several years, some jurisdictions (UK, Australia, Ontario and BC) have been developingprograms to provide early intervention for people experiencing their first episode of psychosis.Evidence points to the importance of early intervention in minimizing the impact of a firstepisode of psychosis. Early intervention may reduce the long-term impacts of the episodeon the individual and the family. It may also reduce the cost of treating and supporting peoplewith a psychotic disorder.

• Ontario’s Mental Health Implementation Task Forces have identified the need for earlyintervention in psychosis programs as a system priority.

• The Provincial Forum of Task Force chairs recognized the importance of programs focusedon early intervention in psychosis, to improving the mental health system in Ontario.

Deliverables will include:

• Development of principles for a provincial framework for early intervention in psychosisconsistent with the principles outlined in Making it Happen.

• Advice on the elements of an early intervention in psychosis policy framework.• Identification of issues and barriers to the development and implementation of early

intervention programs in Ontario (including those related to program definitions) andrecommendations for program development.

• Advice on developing mechanisms to monitor and evaluate programs and mechanisms to ensure that programs utilize best practices.

Parameters:

The Work Group is a time-limited group constituted to provide advice to the Ministry ofHealth and Long-Term Care on a policy framework for early intervention in psychosis.

Reporting Relationship:

The Work Group reports to the Director, Mental Health and Rehabilitation Reform Branch, Ministry of Health and Long-Term Care.

23

Appendix 4a – continued

Composition:

• Membership aims to reflect a range of perspectives and expertise and includesrepresentation from relevant Ministries and from key external partners including:

Ontario Working Group on Early Intervention in PsychosisCanadian Mental Health Association (National and Branch Representatives) Research (Hospital for Sick Children)Consumer RepresentativesFamily Outreach and Response ProgramPrevention and Early Intervention Psychosis ProgramEarly Intervention Program, Hamilton Health SciencesSchizophrenia Society of OntarioOntario Council of Student AffairsMinistry of Community, Family and Children’s Services, Children with Special Needs BranchMinistry of Education, Special Education BranchMinistry of Training, Colleges and Universities, Universities BranchMinistry of Health and Long-Term Care, corporate policy, corporate operations and regional office representation

Role of Members – Committee members are expected to:

• Actively participate in the work of the committee including participation in work groupsthat may be created from time to time.

• Bring to the table their expertise in providing support to people experiencing a first episodein psychosis and to assist in developing, communicating and promoting the committee’swork with their respective constituencies.

• Other key informants with specialized expertise will be invited to meet with the advisorycommittee as required.

Time Frame:

• Four Work Group Meetings – one in July, one in August, two in September.

24

Appendix 4b: Early Intervention in Psychosis Policy WorkGroup Membership

25

Patrick Keaney

Consumer & Peer Support WorkerNortheast Mental Health Centre

Elaine Crawford

Canadian Mental Health Association National Office

Maurice Fortin

Canadian Mental Health AssociationThunder Bay Branch

Dr. Bruce Ferguson

Community Health Systems Resource GroupHospital for Sick Children

Michael Armstrong

Consumer

Ian Chovil

Consumer ConsultantHomewood Health Centre

Heather Hobbs

Early Intervention ProgramHamilton Health Sciences

Dr. Suzanne Archie

Early Intervention ProgramHamilton Health Sciences

Karyn Baker

Family Outreach and Response Program

Rae Johnson

Ontario Council of Student AffairsStudent Crisis Response ProgramUniversity of Toronto

John Trainor / Dr. John Sylvestre

Ontario Working Group on EarlyIntervention in Psychosis

Dr. Rahul Manchanda

Prevention and Early Intervention Programfor Psychosis (PEPP)London Health Sciences Centre

Bridget Hough

Schizophrenia Society of Ontario

Catherine Ford / Kathy Glazier

Mental Health and Addiction Branch, MOHLTC

Beth McCarthy-Kent

Mental Health ConsultantNorth Region, MOHLTC

Eva Vonk

Primary Health Care and Physician PolicyBranch, MOHLTC

Richard Hildreth

Integrated Services for Children, MOHLTC

Wayne Thomas

Special Education BranchMinistry of Education

Monique Wernham

Universities Branch Ministry of Training, Colleges andUniversities

Bonnie Myslik

Canadian Mental Health AssociationWindsor-Essex County Branch

Staff Support

Lisa McDonald / Beena AzhikannickalMental Health and Rehabilitation Reform Branch, MOHLTC

Appendix 5: Making it Happen Principles Applied to EarlyIntervention in Psychosis Services1) Consumer at the Centre of the Mental Health System

Early intervention services demonstrate sensitivity to age, gender, race, culture, ethnicity,First Nations communities, language, gender identity and sexual orientation.

2) Services Tailored to Consumer Needs with a View to Increase Quality of Life

The provision of early intervention services should take into account the individual’sdevelopmental stage.

3) Consumer Choice and Access to Services will be Improved

Early intervention in psychosis services should be available in all areas of the provinceof Ontario and services should be able to respond quickly. Individuals should have accessto treatment (e.g., medication, cognitive behavioural therapies) and support servicesregardless of income or geography.

4) Services will be Linked and Coordinated

Access to early intervention in psychosis services is facilitated through links with othermental health services and services within the more general health and social servicesectors. Once individuals gain access to an early intervention program, there is acoordinated approach to the delivery of needed services and supports. Upon leaving an early intervention in psychosis program, individuals are linked to other services andsupports in the community as required.

5) Services will be Based on Best Practices

Early intervention clinicians and service providers implement treatment programs thatare based on best practices and evidence-based research. Research in the area of earlyintervention should inform practice and help encourage innovation. Consumer and family20 –identified outcomes should be the focus of evaluating early intervention programs;evaluation of programs is required to demonstrate that key early intervention componentsare in place.

6) Mental health funding will continue to be protected and there will be continued

investments / reinvestments in mental health services to support mental health

reform and increase the overall capacity of the mental health system

There should be appropriate and ongoing funding of early intervention in psychosis programs.

20 The term “family” is used in this document to describe any person who is identified as such by an adult experiencing a first episode ofpsychosis. In the case of children, parents or legal guardians are included in the definition of “family”, however, others such as friendsmay also be included in the definition of family.

26

Appendix 6: Recovery PhilosophyThe advice summarized in this document assumes an understanding of the recovery approach as itpertains to mental health. The concept of recovery should underlie a program policy frameworkfor early intervention in psychosis, and is referred to throughout the document in relation toall aspects of the program policy framework for which advice has been given. A brief descriptionof the recovery philosophy is therefore provided here given the importance of the concept tothis program policy framework.

The recovery concept has steadily gained momentum since the 1980’s as a result of three maindriving forces. First, consumers have provided a conceptual base for the recovery approach inwriting of their own experiences. As well, a number of long-term outcome studies suggest thata deteriorating course for serious mental illness is not the norm (e.g., see Harding et al., 1987).21

Finally, there is growing recognition of the role that stigma plays in preventing people with mentalillness from moving on and achieving quality of life and the recovery approach acknowledgesthis and incorporates the need to understand the impact of stigma as a central focus.

Anthony (1993)22 states that, “Recovery involves the development of new meaning and purposein one’s life as one grows beyond the catastrophic effects of psychiatric disability”. Recoverydoes not mean cure. Recovery can occur even if the person still experiences symptoms ofmental illness. Silvestri and Hallwright (2001)23 note that “The real test for recovery is whenthe user feels they have recovered, that is, they see themselves as living a quality of life that is not dominated by their past situation or their current symptoms and stresses”.

The recovery approach is not tied to any one service model, it can be implemented in a varietyof settings and programs. There are, however, implications for programs and services in developinga recovery-oriented approach. There are implications for the role of service providers, theorientation of programs, and the involvement of the broader community in recovery. A recoveryapproach emphasizes consumer choice, flexibility in services, individualized supports, and the importance of families, significant others and communities in supporting individuals withmental illness. A recovery approach also places emphasis on considering the negative correlatesof mental illness such as poverty, stigma, poor housing as well as incorporating wellnesspromotion, rights advice, and the attainment of basic supports such as income.

21 Harding, C.M., Brooks, G.W., Asolaga, T.S, and Breier, A. (1987). The Vermont longitudinal study of persons with serious mentalillness. American Journal of Psychiatry, 144, 718-726.

22 Anthony, W.A. (1993). Recovery from mental illness: The guiding vision of the mental health service system in the 1990’s. Psychosocial

Rehabilitation Journal, 16(4), 11-23.23 Silvestri and Hallwright, (2001) The Future Approach for Community Mental Health, in This is Madness Too. Llangarron, Ross on Wye.

27

Cat

alo

gue

No

. 761

0-22

4296

50.

8M N

ov/

04©

Qu

een

’s P

rin

ter

for

On

tari

o